AN EXPLORATION OF THE EXPERIENCES AND PERSPECTIVES OF NEW ZEALANDERS WITH FETAL ALCOHOL SPECTRUM DISORDER

Main Article Content

Jenny V Salmon
Stephen A Buetow

Keywords

Fetal alcohol spectrum disorder, fetal alcohol syndrome, fetal alcohol effects, challenging behaviours, transcendental phenomenology, classic grounded theory

Abstract

Background


The experiences and perspectives of New Zealanders with fetal alcohol spectrum disorder (FASD) need to be heard since no research to date has been performed. FASD, a neuro-developmental disability with life-lasting effects, is irreversible. The condition is caused by prenatal exposure to alcohol.


 


Objectives


This study aimed to explore and understand the daily challenges of New Zealand individuals with FASD.


 


Methods


Our sequential mixed methods design used two discrete but compatible qualitative methodologies – transcendental phenomenology in Phase One and classic grounded theory in Phase Two – framed by the meta-theory of pragmatism, which allows the use of ‘what works’ in research. One methodology alone would not have answered our research question. Using the same sample of 14 individuals, 14 to 37 years, two separate data sets were produced sequentially using face-to-face unstructured interviews. Participants had been diagnosed with either fetal alcohol syndrome (FAS) or fetal alcohol effects (FAE). Data credibility was checked using triangulation.


 


Results


Six themes common to the participants’ experiences emerged: daily challenges in the classroom; daily challenges in the workplace; coping with mental health issues; memory problems; socialization difficulties and involvement with the law and authority. Phase Two’s emerging theory revealed that because the participants perceived they had been under-supported by the social/health systems, many engaged in illegal behaviours (secondary disabilities) and experienced employment and social problems. Many disavowed having the disability, but with maturity and knowing the signs and symptoms, accepted it. They suggested ways in which their concerns could be resolved.


 


Conclusion


In order that progress in this field can take place, health and social agencies, educational and criminal justice systems and policy-makers need to have increased awareness of the disability and the complex problems that individuals with the disability and their families face.

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References

1. Murphy-Brennan MG, Oei TPS. Is there evidence to show that fetal alcohol syndrome can be prevented? Journal of Drug Education 2001;29(1):5-24.
2. Astley SK, Clarren SK. Diagnosing the full spectrum of fetal alcohol- exposed individuals: Introducing the 4-digit diagnostic code. Alcohol and Alcoholism 2000;35(4):400-410.
3. Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy. Lancet 1973;2:999-1001.
4. Streissguth AP, O’Malley K. Neuropsychiatric implications and long-term consequences of fetal alcohol spectrum disorders. Semin Clin Neuropsychiatry 2000;5:177-190.
5. Lupton C, Burd L, Harwood R. Cost of fetal alcohol spectrum disorders. American Journal of Medical Genetics Part C: Seminars in Medical Genetics 2004;127C(1):42-50.
6. Alcohol Healthwatch. Fetal alcohol spectrum disorder in New Zealand: Activating the awareness and intervention continuum. Auckland: Fetal Alcohol Network, NZ: 2007.
7. May PA, Gossage JP, Kalberg WO, et al. The prevalence and epidemiologic characteristics of FASD from various research methods with an emphasis on in-school studies. Developmental Disabilities Research Review 2009;15:176-192.
8. New Zealand Paediatric Surveillance Unit. Establishment and First Year of Operation. New Zealand Public Health Report 2002;6(6):41-44.
9. Salmon JV. (2007). Fetal Alcohol Syndrome: New Zealand Birth Mothers’ Experiences. Wellington, NZ: Dunmore Publishing.
10. Ministry of Health. (2007). Alcohol Use in New Zealand: Analysis of the 2004 New Zealand Health Behaviour Survey–Alcohol Use. Wellington: NZ Government.
11. Ministry of Health. (2006). Food and Nutrition Guidelines for Healthy Pregnant and Breastfeeding Women. A Background Paper. NZ Government.
12. Copeland B. (2002). Searching for, Finding and Experiencing Friendship: A Qualitative Study of Friendship Experiences of Seven Young Adults with Fetal Alcohol Syndrome/Effects, Master’s Thesis. Victoria: BC.
13. Massey VJ. (1997). Listening to the Voiceless Ones: Woman with Fetal Alcohol Syndrome and Fetal Alcohol Effects. A Doctoral Thesis, Department of Elementary Education, University of Alberta.
14. Stade B, Beyene J, Buller K, et al. Feeling different: The experience of living with fetal alcohol spectrum disorder. J Popul Ther Clin Pharmacol 2011;18(3):e475-e485.
15. Duquette C, Stodel E, Fullarton S, Hagglund K. Secondary school experiences of individuals with foetal alcohol spectrum disorder: perspectives of parents and their children. International Journal of Inclusive Edn 2007;11(5-6):571-591.
16. Tashakkori A, Teddlie C. (Eds) (2003). Handbook of Mixed Methods in Social & Behavioral Research. Thousand Oaks, CA: Sage.
17. Moustakas C. (1994). Phenomenological Research Methods. Thousand Oaks, CA: Sage.
18. Glaser BG, Strauss AL. (1967). The Discovery of Grounded Theory: Strategies for Qualitative Research. Chicago: Aldine Pub. Co.
19. Glaser BG. (1992). Basics of grounded theory analysis: Emergence versus forcing. Mill Valley, CA: Sociology Press.
20. Duquette C, Stodel E. School experiences of students with fetal alcohol spectrum disorder. Exceptionality Education Canada 2005;15(2):51- 76.
21. Duquette C, Stodel E, Fullarton S, Hagglund K. Persistence in high school: Experiences of adolescents and young adults with fetal alcohol spectrum disorder. Journal of Intellectual and Developmental Disability 2006;31(4):219-231.
22. Buxton B. (2004). Damaged Angels. Toronto, Canada: Alfred A Knopf.
23. Clarren SK. (2003). Fetal alcohol syndrome. In Wolraich ML. (Ed.) (3rd Edn.). Disorders of Development and Learning. Hamilton, Ontario: BC Deckler Inc.
24. Streissguth AP, Kanter J. (2002). The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle: University of Washington Press.
25. Salmon JV. Fetal alcohol syndrome: New Zealand birth mothers’ experiences. Can J Clin Pharmacol 2008;15(2):e191-e213.
26. Hornby R. (2000). Community involvement: Lessons from Native Americans. In Kleinfeld J. (Ed.) Fantastic Antone Grows Up. Fairbanks, USA: University of Alaska Press.
27. Lutke J. (2000). Works in progress: The meaning of success for individuals with FAS/E. In Kleinfeld J. (Ed.) Fantastic Antone Grows Up. Fairbanks, USA: University of Alaska Press.
28. Weinberg J, Sliwowska JH, Lan N, et al. Prenatal alcohol exposure: foetal programming, the hypothalamic-pituitary-adrenal axis and sex differences in outcome. J Neuroendocrinol 2008;20: 470-488.
29. Rutman D, LaBerge & Wheway D. Adults living with FAS/E: Experiences and support issues in British Columbia. The FAS/E Support Network of BC: 2002. [email protected]
30. Kleinfeld J. (2000). What the wisdom of practice teaches us about FAS/E at adolescent and young adulthood. In Fantastic Antone Grows Up. Kleinfeld J. (Ed.). Fairbanks, USA: University of Alaska Press.
31. Fast DK, Conry J. Fetal alcohol spectrum disorders and the criminal justice system. Developmental Disabilities Research Reviews 2009;15:250-257.
32. Buetow S, Goodyear-Smith F, Coster G. Coping strategies in the self-management of chronic heart failure. Family Practice 2001;18(2):117-122.
33. Zelaro PD. Executive Function Part Six: Training executive function 2006. www.aboutkidshealth.ca
34. Figley CR. (Ed.) (1995). Compassion Fatigue. NY: Brunner/Mazel.
35. Chasnoff IJ. http://www.childstudy.org/research.php 2005. August 2008.
36. Guimont S. (2000).Why I chose to live alone. In Kleinfeld J. (Ed.), Fantastic Antone Grows Up. Alaska: University of Alaska Press.
37. Canney ML. (2000). Ryland’s gift: How my son taught me to be a good mother. In Kleinfeld J. (Ed.) Fantastic Antone Grows Up. Fairbanks, USA: University of Alaska Press.
38. Bray A, Gates S. (2003). Community participation for adults with an intellectual disability. National Advisory Committee on Health and Disability (National Health Committee), Wellington, New Zealand.